Hi, Kat. Welcome to the weird world of MG!

Hmm, where to start? First, give yourself time to adjust to this odd disease! I've had it since birth, diagnosed at 42, and still don't fully accept it! I'll bet that your family will come around. I tend to describe MG as a car that doesn't have enough (muscle) gas to run. Some people compare it to a bank account, where we only have so much "money" to spend each day and then we run out. Metaphors do help others understand what is happening in the body with MG.

There are many ways to adapt to MG as well. I hope others will give you their thoughts about that. I always take a cooler out with me, with plenty of water. Since heat can make MG exponentially worse, I cool down with the air cranked in the car or at home if I get too hot. And then I lie down for a while to rest the muscles. MGers can have swallowing issues (lot of tips for that), and so many other obstacles to doing well.

I hope you will find a good pulmonologist as well, to do baseline pulmonary function tests. MIP and MEP are tests specific to MG that are done on a regular basis to check how weak the chest wall muscles are and when someone is in a MG crisis.

Did they test you for the TPMT? They should have done that before putting you on Imuran. I hope they did! If not, they need to do it!

Thiopurine methyltransferase (TPMT): The Test

Why not Mestinon? Did they give a reason? Mestinon can be a very helpful drug. It doesn't address the underlying immune process, but does give us more acetylcholine to the muscles. There's the regular tablets, syrup form (which can be titrated easily), and the Timespan tablet, often used by some at night (lasts for 12 hours).

I don't know what doctor has you on the 30/60 Pred, but that could set you up for an adrenal crisis. Once you have been on Pred for a while, the adrenal glands stop working. So what the doctor is doing to your artificial adrenal function is sending you on a roller coaster hormonal ride. That isn't good for your body in general or for MG! And an adrenal crisis (can make the muscles weaker) can lead to a MG crisis. Can you imagine having 30 mg of any drug one day and then 60 the next? That alternating day dosing, which is often done as 0/5 to keep the adrenals working, won't save your adrenal function. The Pred is now doing the job for the adrenals.

I think I should write a small book on the dangers of using Prednisone as a drug in MG. Most experts are now only using it as a rescue drug (sometimes) in an ER, and in the form of IV Solu-Medrol. Pred is very difficult to get off of and comes with so many adverse effects. Instead of only MG, a person can wind up with increased risk of infections, Pred-induced diabetes, brittle bones, and so many other lovely symptoms/conditions.

Have you consulted with a MG expert neurologist? That can make all the difference in a treatment plan. Did they ask if you had a history of cancer in your family before immuno-suppressing you?

Having an EMG at this point would be pointless. The drugs you are on make the signs of MG disappear. An EMG or SFEMG would probably be negative. Very few people do the SFEMG (UC Davis and UCLA). Discuss that with a MG expert.

You should check with a primary doctor and have a baseline metabolic panel. Then they can address any possible issues. Have your B12 checked as well, for it's a very common deficiency.

As far as surgeons for thymectomy, a MG expert could give you that information! A cardiovascular specialist would do that type of surgery (of which there are different kinds). Guys, do you have any good referrals for Kat about this in California? Maybe you could do a post on this topic alone.

I'm sure you're referring to this guy. I know that there are others in the area, but don't remember their names. Here is a past post of posters from NV.

Home from the Hospital

http://www.myasthenia.org/LinkClick....o%3d&tabid=306

Take some time to get to know your MG! I know when I'm becoming worse by many different signs. But those signs can vary according to what muscle groups I've been using. You'll find that the more muscle groups used at a time (i.e., socializing uses a lot of them), the weaker a person can become and more quickly. Before my MG crisis, I had become weaker so slowly (due to hot weather), that I didn't realize the severity of it.

There are "tools" that can help to know how you are doing. When a MG patient's breathing becomes weaker, oxygen saturation/O2 can go lower. If that becomes too low, the heart kicks in to pump more oxygen throughout the body, which raises one's pulse. So a higher pulse can be a sign of becoming worse (as can a low O2). Simple tests such as holding one's arms out in front and seeing how long one can old them there is another test. Looking at the face in a mirror can be revealing. My nose actually drooped during my MG crisis, which I have a photo of. Taking photos of before and after does help as well. Blood pressure can also go up when someone becomes worse.

Treatments do help MG. But one also has to alternate activity with rest. We need to recharge our batteries. Think of it as supply and demand. Too much demand for acetylcholine due to too many activities and we become weaker. Our supply is always lower. Resting or sleeping will rest the muscles and help make us stronger.

There's really so much to talk about with MG. I don't want to overwhelm you! If you have any questions, please bring them up. The forum has been kind of quiet lately. But there's always someone willing to help out!

I hope you will find some more doctors to help you once you move. Just try to take it easy and not expect too much of yourself! There is a lot to learn about MG and how to adjust your life to it. And everyone is different. You may find just the right treatment plan that will put you into remission or make you strong enough to work and do what you want! But you have a role to play in making MG as good as possible as well by not having too many triggers (stress, infection, surgery, lack of sleep, overdoing it, being in the heat, etc.) in your life.

Please post anything you need to! NeuroTalk is a great forum with people who love to help!

Annie

Thanks so much, Annie. You've given me a lot to think about!

My neurologist is a smart guy, and has dealt with MG throughout his career but I don't think he's a specialist per se. I do think I need to get a new neuro, but it's pretty impossible at this point. I will have to wait until I am in Vegas.

I think my current neuro still thinks I only have ocular MG, which prednisone treatment is the protocol of choice. However, the last time I met with him I explained that he wasn't listening carefully to my back story - that I had had episodes of arm weakness, etc. and he seemed to believe me. I asked him to put me on mestinon and he put me on imuran instead, stating that he's had a lot of success with his patients . Not sure why the resistance to mestinon other than perhaps he fears it will mask deterioration since it's kind of stop-gap drug, and perhaps pervasive doubt that I have more than just ocular MG.

I have Graves' disease and had my thyroid radio-ablated when I was 16. I've been on thyroid replacement therapy for years and it's been reasonably well-managed. The problem with ordering a lot of tests is that I end up paying out of pocket for them, and I have to balance care with costs.

I think the doctor listed in the MGFA pdf and the doctor the forum members talk about are different but work in the same neuro-group. Seems that might be the best place to start in Vegas Thanks!

I'm currently searching through back-posts and reading up - this is a wealth of information!